The Impact of Pediatric Critical Illness and Injury on Families: A Systematic Literature Review

1. The Impact of Pediatric Critical Illness and Injury on Families:A Systematic Literature Review Lihinie de Almeida, Susan Ly, Marysia Shudy 08/01/05 National Institutes of Health United States Department of Health and Human Services Bethesda, MD 1

2. Rationale Audience: • Patients, families, and health care personnel of the PICU Purpose: • Elucidate: • Stressors • Needs • Social Impact • Psychosocial Impact • Health impact • Present coping strategies of families with children in the PICU • Reveal deficiencies within the current research • Encourage provision of further interventions

3. National competition for summer scholarship selected 3 first-year medical students from all AAMC accredited medical institutions Literature search using National Library of Medicine Library at the National Institutes of Health Supervision by pediatric intensivist (C.E.N.) and pediatric pulmonologist (C.L.) Methods

4. Child Illness Impact Families Chronic Critical Experience Trauma Siblings Effects Pediatric Care Parents PICU Teenagers PubMed Keywords:

5. Practice: Children’s National Medical Center PICU Bi-weekly Rounds Research: Naval Medical Research Center Lab Combat Casualty Care: Resuscitative Medicine Weekly Lab Exposure to Critical Care Medicine

6. Stressors Procedures • Injections • Running IV fluids • Drawing blood • Giving oxygen • Putting tubes in child • Respirator • Bandage changes Sights & Sounds • Constant bright lights • Sudden alarms • Other sick children • Busy staff 7

7. Stressors Child’s Appearance • Tubes in child • Bruises, cuts, incisions • Covered eyes • Child restricted to bed • Invasive equipment Child’s Behavior and Emotions • Whining • Demanding behavior • Inactivity • Withdrawal • Unresponsiveness • Loss of bowel or bladder control 9

8. Staff Communication Explanations too fast Technical jargon Talking about matters not relating to child Too much information Lack of emotional support or encouragement Sudden dismissal Staff Behavior Rushing Inappropriate joking or laughing Indifference towards child or parents Stressors

9. Stressors Parental Role Deprivation • Separation from child for extended periods • Incapacity to care for child • Inability to hold child • Restricted visiting hours • Failure to console child

10. Stress Vulnerability Factors • Higher socioeconomic status • An incomplete family situation • Single-parent households • A higher number of preceding life events • A lower functional status • A longer duration of hospitalization for the child *all resulted in higher PDS scores

11. Parent Identified Needs Psychological • Know how child is being treated • Feeling of hope • Assurance • Have questions answered honestly • Know what is being done for child • Feel needed by child • Feel hospital personnel care about child • Know prognosis • Receive information daily • Communication

12. Physical • Personal needs • Food and drink • Sleep and rest • Exercise and activity • Visit at any time • Have a place to stay near child • Talk to doctor daily • Help with child’s physical care • Cry • Allow siblings to be near child

13. Social • Finances • Transportation • Religious support • School support • Family togetherness • Care for other children

14. Overview of Impact Studies • Studies: • prospective • single-sample studies • sample sizes from 7-189 families • psychological, physical, social impact • Outcome Measures • PRISM • PSS:PICU • FACES-III 54

15. Overview • Sample Information: • Caucasian • Two-parent households families • Mothers • Statistics on PICU children: • Age ranged from 2 days-25 years old • 10 =PICU for the first time • 8 = unexpected PICU admissions • Trauma, cardiovascular, respiratory, and neurological

16. Mothers: apprehensive panicked guilty factors of illness severity and time after discharge decreased mental health with potential chronicity perceive a worse illness severity befriending hospital staff being close to the child Fathers: more likely to use expertise of staff higher catecholamine levels when child is in the PICU Psychological Impact

17. Psychological Impact • Parents: • higher levels of stress and increased catecholamine levels for parents of younger kids • greater emotional support for parents of children with life-threatening illnesses • Grandparents: • stressed • concerned

18. Psychological Impact • Siblings: • feelings of depression • fear for own health • withdrawing from injured child • isolation and unimportance • resentment or rivalry

19. Parents/Caregivers: worsened physical health feeling numbness physically sick tired headaches anxiety Family Unit: sleep nutrition increased infections physical fatigue Physical Impact Family members experienced physical symptoms as a result of having a child with a critical illness. 57

20. Social Impact • Family functioning and adaptability: • pre-injury functioning • greater concerns about the child’s future • Illness severity • Social support: • family stress • cognitive appraisal • Parents and caregivers’ functioning decreased: • lack of time spent with family • financial costs • No change in family functioning and cohesion

21. Social Impact • Marital adjustment: • increase in marital conflict • Increase in divorce • no significant difference in marital adjustment

22. Social Impact • Mothers: • decrease in family cohesion after PICU admission • adaptability related to: • illness severity • location • length of intubation period

23. Social Impact • Fathers: • family cohesion: • illness severity • length of stay • adaptability: • length of stay • stress: • PICU procedures • financial concerns

24. Social Impact • Siblings: • poorer self-concept related to the patient’s functional outcome • negative impact on behavior • poorer relationships with peers in school

25. Coping Behavioral and cognitive efforts utilized to manage internal and external stressors: • emotion-focused: positive reappraisal, self-control, escape-avoidance, acceptance of responsibility, distancing • problem-focused: social support, problem solving, confrontive expression

26. Factors that Affect Coping • Age • Gender • Ethnicity • SES • Past crisis • Environment • Support

27. Familial Coping Two levels of interactions: • how a family internally deals with difficulties between its members • how a family deals externally with problems in the environment Ideally, families cope at both levels.

28. Coping Coping is enhanced when: • Near child often • Participate in child care • Child treated as an individual • Accurate information • Reassurance • Daily updates • Social support

29. Interventions Twenty-five studies aimed to relieve the impact of critical care upon pediatric patients and their families.

30. Interventions • Meal vouchers • Sleeping accommodations • Transportation/parking • Laundry facilities • Telephones

31. Interventions • Informative letter • Home visit • Hospital film • Web page updated daily • Animal-assisted therapy

32. Interventions • Group sessions • Creating Opportunities for Parent Empowerment (COPE) • Audiotape • Literature • Activities • Nursing Mutual Participation Model of Care (NMPMC) • Open ended questions • Participation • Goals

33. PICU team 83 81 82 84 85 86

34. Further Research • Long-term outcomes • Non-maternal members • Non-nuclear families • SES implications • Demographics • Sample size 87

35. Limitations • Comprehensive but not exhaustive • 8 week time span for literature search • Different outcome measures among studies

36. Thank You! 88 89